As lay people we gave value to the research because we understood

Transcription

1 As lay people we gave value to the research because we understood Why we should involve patients and carers in health research. The SHARED study is an example from the UK. Dr Carole Mockford 1, Professor Kate Seers 1, Dr Sophie Staniszewska 1, Professor Jan Oyebode 2, Mr Matt Murray 3, Ms Rosemary Clarke 4, Ms Rashida Suleman 4 Study Administrator Ms Claire New 1 Lay co researchers Sue Boex, Yvonne Diment, Richard Grant, Uma Sharma, Jim Leach University of Warwick 1, University of Bradford 2, Alzheimer s Society 3, UNTRAP 4

2 Patient and Public Involvement in Research Systematic reviews Brett J, Staniszewska S, Mockford C, Herron Marx S, Hughes J, Tysall C, Suleman R (2014) Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations Oct 2014;17(5): Brett J, Staniszewska S, Mockford C, Herron Marx S, Hughes J, Tysall C, and Suleman R (2014) A systematic review of the impact of patient and public involvement on service users, researchers and communities The Patient: 7(4):387 95] Mockford C, Staniszewska S, Griffiths F and Herron Marx S (2012) The impact of patient and public involvement on UK NHS healthcare: a systematic review. International Journal of Quality Healthcare 24(1): PPI checklist Staniszewska S, Brett J, Mockford C and Barber R (2011) The GRIPP checklist: Strengthening the quality and transparency of reporting for patient and public involvement in research International Journal of Technology Assessment in Health Care 27:4, Staniszewska et al (2016) Revised reporting guidance for patient and public involvement in health research: a Delphi consensus study to develop GRIPP2 SF and GRIPP2 LF (submitted) Funding bodies requirements Lay interest groups e.g. UNTRAP (Warwick Medical School), Alzheimer s Society Research Network

3 This presentation summarises independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit Programme (Grant Reference Number PB PG ). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

4 PPI Patient and Public Involvement SHARED STUDY Services after Hospital: Action to develop REcommenDations

5 Aim of the SHARED study To develop service user led recommendations for carers and older people with memory loss discharged from acute care to community care

6 Research Question (Research idea co-developed with Alzheimer s Society Research Network) Measure the Impact (Used own experience of memory loss and findings from the study to measure success and need for new research) Disseminate the Findings (Co-presented at local and national events about the study and their involvement; co-authored academic papers) People affected by memory loss as coresearchers Plan the Research (Lay co-applicants: Contributed to the research design; met regularly with the lead researcher and were available for consultation) Perform the Research (Lay members of the Project Advisory Group: met regularly with the lead researcher to oversee progress and achievements of milestones. Co-researchers: Interviewed participants) Adapted from Alzheimer s Society Analyse the Research (Co-researchers: developed the framework for data analysis; facilitated focus groups Study participants (Patients/carers): attended focus groups to shape and finalise recommendations)

7 INTRODUCTION AIM AND OBJECTIVES

8 Financial cost of returning home with dementia 2b cuts in social care funding over 10 years Age UK (2015) UK NHS funding has not kept pace with demographic changes and increasing needs Age UK (2015) Total UK cost for health and social care = 26.3b includes 17.4b paid for by families ( 11.6b in unpaid care; rest for private care) Health Foundation (2011), Alzheimer s Society (2014) Health and social care services are struggling to meet demand Care Quality Commission (2015) Age UK (2015)

9 Reasons for this study There is little evidence documenting carer and patient perspectives of health and social care services during and after hospital discharge. Glasby et al (2004); Mockford (2015) There is an absence of evidence on good outcomes for carers at hospital discharge. ADASS (2010) Little published evidence to guide best practice for people living with dementia who leave hospital and return home. Naylor et al (2007) Little evidence that discharge planning meets best practice. Bauer et al (2009)

10 Objectives Experiences of carers and people living with memory loss of service provision post hospital discharge Involvement of carers and people living with memory loss in decision making at, and after, hospital discharge. Enablers and barriers to providing good discharge planning by health and social care professionals

11 METHODS

12 Recruitment of Lay Co Researchers Warwick Medical School University Teaching and Research Action Partnership (UNTRAP) Alzheimer s Society Research Network Patient and Public Action Group (PPAG)

13 Lay co researchers Formed a study group Criminal records check Occupational health check Hourly payment and expenses Training Research ethics and confidentiality Interviewing techniques and practice Qualitative analysis and focus groups

14 STUDY PARTICIPANTS July 2014 January 2015 Acute hospitals in two UK NHS Trusts Aged 65 or over Memory loss In patient for at least one week Is returning to their home Has a carer in frequent contact who also consents

15 Co interviewing Patients and Carers July 2014 March 2015 Semi structured interviews at home: Soon after discharge (n=15) 6 weeks post discharge (n=14) 12 weeks post discharge (n=14)

16 Lay co researcher, Sue talks about interviewing patients and carers It was a very worthwhile experience for me as a lay person to interview patients and carers in their own homes as although we used a template with the questions we wanted to ask them, they really opened up to us and it was clear that they wanted to voice their concerns about their situation and their own experiences. Sue Boex

17 Co Interviewing the Staff Sept 2014 February 2015 One off semi structured interviews in the work place: Admiral Nurses (specialist nurses for dementia) (n=4; in acute hospital and community) Health professionals (discharge nurses) (n=2; in acute hospital) Social care professionals (n=11; in acute hospital and in the community)

18 ANALYSIS

19 DEVELOPING THE FRAMEWORK FOR ANALYSIS Large photo of lay co researchers

20 Developing a Framework for Analysis with the Co Researchers SIX key themes from patient and carer interview data informed the framework: Complex involvement of health and social care services, and other professions Organisation and delivery of care from care organisations Carer and patient personal experience following hospital discharge Communication and social interaction between staff and families Carer and patient expectations of service provision Positive experiences of caring and being cared for after hospital

21 RESULTS

22 Focus group 1 The findings presented to study participants in 12 key statements Discussions facilitated by lay co researchers Comments recorded and collated Key statements were scored

23 Focus Group 2 A second focus group was convened to: discuss feedback from health and social care professionals discuss the scores given for the key statements finalise the recommendations

24 Results of the SHARED study Four key areas in which services could be improved for people with memory loss Discharge plan and planning Co ordination of health, social care services and care organisations Provision of specialised support and advice after an extended time in hospital The quality of daily care delivered by care agencies Poor communication between hospital staff and patients/carers Confusion of faces and services Low expectations of what could be provided, not knowing who to turn to, left alone Did not meet carer s expectations and caused considerable stress

25 RECOMMENDATIONS

26 Recommendation 1 Patients with memory loss should have a written, mutually agreed and meaningful discharge plan

27 Recommendation 2 Patients with memory loss should have a named co ordinator of services

28 Recommendation 3 Improve the quality of care provided by care agencies in patients homes.

29 DISCUSSION

30 Key messages from SHARED Seeing service provision through the eyes of the patient and carer Describes how services are received Provides helpful information for decision makers at all levels It is a starting point for planning and improving services It has potential to contribute to more efficient use of resources and to improved health outcomes in communities

31 The Impact of PPI on the SHARED study and the Research Team [lay researcher slide] What we are getting out of being a co researcher LEARNING UNDERSTANDING GAINING INSIGHT AND QUESTIONING FEELING VALUED USING OUR SKILL BASE ENJOYMENT What we think we are adding to the study ADDED VALUE EMPATHY CONFIDENCE TO CHALLENGE DEPLOYING OUR SKILLS

32 Their experience in their words I have been a carer for my mother from the age of nine. I have family members and friends who are caring for their family members with memory loss and Dementia. It was a different type of challenge for me which reinforced my beliefs around the turbulence and the uphill journey family carers go though in getting support and recognition as family carers and the sad experiences of the service users they are caring for. [Uma] Being an ex-carer and co-researcher really grounds you as you identify with their problems and it is difficult not to bring your own experiences into play. For me it was an emotional experience but one that I would not have missed. [Sue]

33 .and finally As lay people, we gave value to the research because we understood [Richard]

34 Thank you!

35 Mockford et al (2016) The development of service user led recommendations for health and social care services on leaving hospital with memory loss or dementia the SHARED study. Health Expectations (online doi: /hex.12477) Mockford et al (2016) A SHARED study the benefits and costs of setting up a health research study involving lay coresearchers and how we overcame the challenge. Research Involvement and Engagement (2016) 2:8 (online doi /s ) Mockford C (2015) A review of family carers experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research. Journal of Healthcare Leadership 2015: (online doi.org/ /jhl.s70020) Contact details Dr Carole Mockford Senior Research Fellow Warwick Medical School, University of Warwick CV4 7AL carole.mockford@warwick.ac.uk